Children to Learn to Eat And Drink Again

Children to Learn
to Eat And Drink Again through Groundbreaking Starship Pilot
Programme

Programme funded by Starship
Foundation new Five Star Sponsor New World

A
groundbreaking pilot programme has just been launched at
Starship Children’s Hospital, which aims to help hundreds
of children get off feeding tubes, and learn to eat and
drink again.

The trial Hunger Provocation Programme
started at the national children’s hospital on 18 August.
The $45,000 needed for the programme is being funded by New
Zealand-owned supermarket New World, which today announced
it has come on board as the Starship Foundation’s newest
five star sponsor.

Around 70 children each year are
discharged from Starship with a feeding tube still in place,
requiring their parents or caregivers to continue to give
their child liquid feeds through a tube that is either
inserted through their nose or surgically inserted into
their stomach. It is estimated there are currently more
than 600 tube-fed children in New Zealand, with 1 in 4
identified as being appropriate for tube weaning.

While in hospital children may need to be fed via a tube
for a variety of medical conditions, including prematurity,
metabolic disease and heart defects. Unfortunately there are
a number of children who, despite resolution of the medical
condition, become dependent on the tube and unable to return
to oral foods despite the physical ability to do so. In
some cases tube dependency can be life long.

“These
tube-fed children may not learn the oral motor and sensory
skills needed to eat and miss out on the social aspect of
mealtimes. As a result, some children will refuse to eat or
drink. They rely on the tube for all their nutrition despite
no longer having a medical requirement for it,” says Mandy
Beatson, Starship Paediatric Speech Language Therapist.
“The Hunger Provocation Programme at Starship is the first
step towards ensuring these children are provided the
support and opportunity to live more normal lives where they
can eat and drink for themselves.”

There is currently no
such programme in New Zealand, with the only option for
parents to either travel abroad for treatment, attempt
on-line supervision, or pay around $25,000 for an overseas
therapist to try to manage the complex feeding programme in
the child’s home without medical support.

A one-off
trial was successfully completed at Starship with five
year-old Thomas Morrison last year, and four more patients
have just been selected for the roll out of the programme
this month. Each patient is required to attend an
outpatient assessment followed by a three week daystay
programme with intensive daily input from a primary
consultant, dietitian, clinical psychologist, occupational
therapist, speech therapist and nurse.

“It’s changed
our lives. I was out with Thomas shortly after completing
the course. It was time for morning tea and I didn't have
the feed pump or anything for him. I just popped into the
supermarket, bought a banana and mashed it up,” says
Thomas’s mother, Louise Morrison. “It was so lovely to
finally have a normal experience with food, and to be able
to cook for my son is amazing. Thomas is now at school and
is able to go and eat with his classmates at lunchtime
instead of just sitting there doing nothing with his pump
going,”

Three year-old Nakiyah Reid travelled from her
home in Wellington to begin the three-week programme on 18
August. As a baby she had an inverted jaw, found it hard to
latch with breastfeeding had severe reflux and failed to
thrive. She has relied on a feeding tube to sustain her
since she was born. “I’m super excited about the
trial,” says Nakiyah’s mother Shoni Reid. “I have
dreamed about this day for so long. It has been such a huge
stress on us. She deserves to eat like her sisters. To
have my baby eating means the world to me.”

Although
New World is now formally on board with Starship, it is not
the first time the organisation has had a positive impact
within the hospital. The supermarket’s hugely popular
“Little Shop” promotional mini food items were used by
Starship’s Consult Liaison Team in the treatment of
children with extreme food anxiety problems caused by
problems such as food allergies or oral aversion.

“We
are thrilled to be able to become a key sponsor of Starship.
To have a national clinical resource available to make a
real difference to Kiwi children and their families is
invaluable. We know without the support of organisations
like New World initiatives such as the trial Hunger
Provocation Programme wouldn’t be able to happen. We are
pleased that our sponsorship means we are helping Kiwi
families,” says Steve Anderson, Managing Director New
World.

Also as part of its new partnership with the
Starship Foundation, New World is providing weekly fresh
fruit baskets onto the wards at the national children’s
hospital, for parents and caregivers to enjoy.

“We are
so grateful to New World for their generosity to Starship
and for supporting the work we do to care for New Zealand
children and their families,” says Ms
Beatson.

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